I am a VERY Lucky Girl.

The only bad thing about e-cards is that they are not something you can look at over and over again like real cards. I should start a folder on my computer and just save em. Because I love when Adam sends me e-cards. They make me all warm and fuzzy inside. 🙂

I really have the best boyfriend I could ever ask for.

I am so lucky to have a man in my life who loves me as deeply as he does, who still, after everything we’ve gone through, sees me as an amazing woman who happens to have illnesses that affect her, and who reminds me of that just as easily.

I honestly wish I had even half the patience for myself that he has for me. Or, to be more accurate – I wish that I had half the patience with the limitations and restrictions on my freedom that occur because of my disabilities, and that I could consistently separate those disabilities from my opinion of my self-worth.

I’d go so far as to say that 95% of having good self-esteem while being disabled is knowing that the disability is just something you have to work around, and that the challenges you’re faced with because of the disability have no bearing on your goodness or worth as a person.

When I was first diagnosed with Multiple Sclerosis, Adam and Mom were in the room with me. The doc gave me the diagnosis, and my response was something along the lines of, “Great. What do we do to treat it or get rid of it?” The doctor loved my attitude. I didn’t cry or freak out from the very get go. I honestly think that at first it was harder on my mom than it was on me… probably because she knew more about what it meant… but it wouldn’t have changed my view on it. It took several hours for me to get scared, and several days to really feel sorry for myself.

The thing is, MS didn’t become some kind of really BAD thing in my life until the seizure disorder wrecked my ability to drive and do a lot of things for myself. When it became truly dis-ABLE-ing (misspelling intentional), I started really questioning my self-worth on a regular basis. I started thinking that because I couldn’t cook or clean as much as I used to that I was becoming a burden. I was suddenly dependent on Adam to bring me food and care for me in ways that I’d never had to depend on someone before, and obviously, that makes me an inferior partner, right? Wrong.

When it comes down to it, I do the best I can with what I have to work with – and what more can anyone ask of themselves? Sure, I’ve got MS and a seizure disorder… and I keep having random bad days where some days I’m only actively aware and awake for maybe 4-5 hours total, while having maybe 10 seizures per hour… but I’m still me.

I’m still preparing for the upcoming CA Bar Exam at the end of February. I’m still a crazy entertainment law geek who is maniacally following the NBC/Conan O’Brien debacle as it unfolds. I’m still writing a book for others with MS and am constantly looking for ways to make the absurd and sad parts of our lives seem somehow hilarious even to those of us who are stuck in the throws of self pity. I still keep up this blog as best I can. I still keep up with my friends online and on the phone. I still songwrite when I’m able, and I have never, EVER – and WILL never give up on life, even with suicidal ideation or compulsion that comes from medicine or old thought patterns that I do not like every once in a while. Oh, and I still play games and workout and watch movies and all the other stuff that I always liked doing — because that is what makes life worth living – enjoying yourself and working on things that make you feel like you contribute to the world at large.

When I look at myself objectively like that, knowing that I show Adam the kind of love that I do, how could he not love me as much as I love him? I’m still me!

I’m also crazy lucky because my parents have shown me an immense amount of support and love through this entire experience, and they continue to do so.

This weekend, Mom and Dad drove down because they knew how awful I was feeling. I had a stomach flu. (Yes, I had me a bucket.) Mom was hoping that some Mom-snuggles and time with Dad might make things a little better, and she was so right!


Unapologetically stolen/borrowed from http://www.icanhascheezburger.com

Having a support network of people who care about you can make all the difference in the world. That’s why I spend a lot of time on boards like Patients Like Me, the Swank Diet Board, and others.

I want to take this opportunity to offer myself up to you, Readers. Aside from just writing, I like having a relationship with the people who read me. Please feel to comment or email. I’m happy to offer whatever support and friendship I can for you as well. 🙂 We all have nuggets of truth about life to offer one another, and I’ve never regretted getting to know someone who shares my condition or even Epilepsy or a related seizure condition.

Hope you’re having a good day, and thanks for reading! 🙂

This is a day I didn’t think would come.

My mom and dad are coming in town just to give me a hug and a kiss because I’ve been feeling bad, and I didn’t fight them on it. I never thought that day would come. I usually fight that stuff because I try to be tough. I think I realized that tough’s got nothing to do with not accepting love from your folks. I can use all the love I can handle.

I’m still not feeling awesome. In fact, I can’t really explain the kind of bad I’m feeling today. It’s not terrible, it’s just kind of a general malaise/fatigue coupled with a lot of losing control over my body.

I’ve already lost count of my seizures. I tend to just stop counting after 20 when I hit it before 10 am. Last night, I slept through the night – tons of nightmares, though – none of which had to do with the bar exam, for the record.

This time, I’m not afraid of the test, though I am a bit pissed at myself for getting so sick that I forgot to put in for extra help — but I would have just asked for the ability to take the test in bed if the seizures got too bad and for some additional light, so I don’t think it would make all that much difference anyway.

On a totally different topic – I really miss making music. I haven’t been able to practice guitar in months because of the seizures. I fell out of my chair with my guitar on once when I had a seizure and I really hurt myself. I’ve been to afraid to put on my guitar since, when I was feeling bad. I don’t want to break the guitar.

So yeah, 5 seizures since I started writing this entry, and about an hour. And I’m really tired. Back to bed, I go.

I think I’m going to lay back down. I feel really worn out.

*yawn*

I’ve been wicked sick the last 3 days.

Day 1 – seizure after seizure with time travel.

Day 2 – stomach flu

Today, I have slept almost all day, and for the extremely short times I was awake I was reasonably sure I was going to get sick like yesterday. I’ve had so many atonic seizures, I’m not even trying to sit up on my own.

I ate supper at 8, when it was time to take my night time meds, and I am now more awake than I have been all day…but that’s really not saying much.

It’s time to go to bed, anyway. Fortunately, my tummy is not bothering me right now, except when I’m about to have another seizure – so at least it’s back to normal.

I hope I’m better enough tomorrow to get back to studying in a real way. I haven’t been able to even stay “up” for more than 30 minutes at a go yet, I don’t think.

Sorry I don’t have anything more interesting to post.

No time for this.

Fuck you, multiple sclerosis, for ruining my morning. For making me late with my studying, for making me question my worth as a person and as a partner, and for holding me back in life. I strive against you every day and you make life hard.

Fuck you for making me sick so often that the man I love doesn’t feel like he’s gotten to see what life is like “normal” with me, even after more than 4 years.

Fuck you for making “normal” a rollercoaster. Fuck you for the pins and needles in my feet and legs today, and for the tears that took 10 minutes to stop in a public library bathroom. Fuck you for 41% on MBEs yesterday, when I’ve studied.

Fuck you for existing, MS. Fuck you for making me a worse person than I would be without you.

I hate you. Do you HEAR ME, MS? I HATE YOU!!!!

I won’t LET you ruin my life.

I *WON’T*!!!

And I know you won’t stop trying, so I can’t either.

Back to studying, for the numb-toed, teary-eyed, seizure girl who just had a fight with her perpetual boyfriend, because I won’t let you win.

You can try as much as you like, you backwards-thinking brain-eating disease, but my will to live and be happy – to make a difference in the world around me and to create – is greater than your ability to destroy me from the inside out.

So try as you like.

I defy you.

You and Me and the MS makes 3…

I’ve been asked, several times, how it’s possible for me to keep such a positive attitude when MS has had such a profoundly negative effect on my life. That’s a VERY fair question.

If you read my previous entry, you’ll notice that I’ve taken to personifying whatever symptom is affecting me, and talking directly to it. This is not an accident, and, believe it or not, it is not insanity either.

See, when I first was diagnosed with MS, I believed there was something wrong with me, and this lead to severe depression… because if the doctors didn’t know what caused MS, and they couldn’t fix it, odds were, it was somehow my fault.

Not only was I feeling physically miserable, but emotionally, I was in tatters because every physical ailment was potentially going to stick around forever, and it wasn’t just because of MS. It was because of me, since it was probably my fault that I had MS anyway, even though I didn’t know how I did it.

Then it got worse. I saw how badly my family and friends were affected by my illness. And since the illness was obviously my fault, I saw how badly I was constantly hurting my family and friends, simply by my continued existence with the disease. Enter suicidal ideation, stage left.

When persistent suicidal thinking enters the picture, rational thought has left the building, and it’s time to re-examine whatever situation you are in with a trained professional.

Fortunately (or unfortunately depending on your viewpoint), I was equipped to deal with this situation, having chosen to hospitalize myself for suicidal depression back in 2003… which, I now know to have been during an MS exacerbation that was pre-diagnosis.

The best thing that I took away from that experience was the knowledge that I should always trust my support network with the knowledge that I am having suicidal thoughts (because the worst thing you can do is keep it to yourself and let the shame spiral continue), and that I should always ALWAYS have a psychologist available to myself in case I needed one. So, when this occurred, I already had one in town with whom I had built a good, trusting relationship.

Dr. K (I prefer to call her Amy.) asked me a series of questions that made my life so much better.

“Did you actively choose to have MS?” Obviously, the answer to that was no.

“Can you control anything at all that the MS chooses to do?” Again, the answer is no.

“Do you have any knowledge of what the MS is going to do in your body prior to it happening?” No.

“If you could stop it, and make it go away, would you?” I just about SCREAMED, “YES!!!”

And then she said to me something that absolutely changed my entire life.

“Well, it sounds to me, then, like Multiple Sclerosis has a mind of its own, and is an uninvited guest in your body.”

Suddenly, having MS wasn’t a personal failure. I was carrying around an uninvited guest. No wonder I was so tired all the time!

Through later sessions with Amy, I learned to regain a sense of self and a sense purpose and to improve my relationships by making room for MS in my life — to recognize when I’m angry at someone vs when I’m angry at MS, so I don’t do things like yell at my mom when I should be writing journal entries.

I’m learning to honor MS’s needs by going to bed when it tells me it needs to, and eating the right foods, so I have more time to do the things I want to do.

AND, now that Dr. Zamboni’s found out about the vascular part of our disease, it’s even less likely that developing MS was my fault to begin with. Guilt = GONE.

And that’s the story of how my MS ended up with a personality, and I ended up having the disease while still being upbeat about life.

Dear Fatigue,

Dear Fatigue,

You and I go way back. I know we do… way farther back than diagnosis or even acknowledged symptoms. Now that I know you for what you are, and I’ve come to accept you and know the difference between you and regular tired, I’m alright with you. We’ve made our peace. And honestly, with the combo of the time travel seizures, the comedy – man, the comedy.

You’re pretty alright sometimes. I especially liked the time Adam told me I fell asleep in the middle of telling him a bedtime story when I thought I was 5. I sound adorable there, thanks to you!

But really, this whole 2 or 3 nights of not being able to sleep well followed by 2 or 3 days of not being able to stay awake well… I’m not loving it.

Sure, I slept well last night. But making me take 3 naps today? 3? Really? And for me to want to go to bed right now? It’s 7:40. That’s ridiculous.

But what’s more ridiculous – caving to your whims and having a higher probability of feeling well tomorrow, or not listening and forcing myself to stay awake and study criminal law, when my retention rate is not very likely high, and my likelihood for seizure only increases the longer I force myself to be up when I want to sleep?

You leave me very little in the way of options, and that frustrates me. I know we need to work together if I’m going to pass the bar exam this time, and the only way I’m going to do it is if I’m prepared, which means I need to be able to study – which means I need to have timealert time – in which to do so.

As a show of good faith on my part, I’m going to take my nightly meds at 8, as always, clean up, and cozy into bed just afterwards – a full 3-4 hours earlier than usual. Hopefully, this extra time will allow you the opportunity to get the extra rest you crave.

I want to work with you, not against you. Please, please, please help me study well tomorrow.

Please and thank you,

Rae


Now, I know there’s no arguing with MS or any of its symptoms.

Besides, if Fatigue even did have its own personality within me, it’d be too tired to respond and too lazy to have planned any of this.

Fatigue is what happens as a side effect of lots of other random shit happening inside my body. It’s that bright red flashing light on top of the phone that lets you know there’s a call when ringer is on silent… because really, your insides can’t call you or send you an email or text. This is the closest thing it’s got.

Fatigue is my friend on the other end of the line, saying, “Uh, hi there, sorry to be a bother, but just in case you thought everything was hunky dory in here, there’s bad stuff going down, loads of it… and by the way, you’re really stressed. I know you really well, and you just will not take a long enough break for the rest of your body to get the rest it needs, so I’m shutting you down for a while. Hope you understand.”

It’s just hard not to get stressed when you’re studying for a test that allows fewer than 40% of all participants to pass. Despite that, I know that the more I stress, the worse my MS will likely flare, meaning the more fatigued I will get. I figure if I can get Taoist on this, and accept my body’s need for rest now, maybe it won’t snowball into a relapse like last time.

I know I’m competing with no one but myself. I just feel like I’m pushing a great big, invisible wall some days. Multiple choice studying is mostly like a trivia game to play (if you enjoy rules like I do – and yeah, you can make fun of me for that if you want to. I like D&D too!) and memorizing black letter law isn’t any more difficult than memorizing 4 mallet rag-time pieces used to be… just different.

And the best part is, this go-round, I’m even inspired because every day, I remember my purpose behind wanting to be an attorney — to help friends become rock stars and movie makers. To bolster creativity. To help open the gates to more new creators.

So if I’m enjoying it this time, I know I’m less stressed… I just need my body to cooperate.

Don’t make promises you can’t keep.

That subject line right there — that’s a warning to all you good folks out there as much as it is a reminder to me.

See, in my last post, I promised a better entry “tomorrow.” Well, “tomorrow” is now “yesterday” and, as you can see, there was no entry yesterday. I was too busy studying for the bar exam, a test full of fact patterns comprised of people making promises they didn’t keep.

And I probably should continue studying for that test right now.

Oh fart. There’s that word again. “Should.”

I will not “should” on myself this season. As soon as you start with the “I should be studying” talk, that’s when the unbearable mountain of stress starts.

Well, I will have none of that. I either will or will not study, and I either will or will not be prepared come test time. I prefer “will.” That’s why I started studying at 7 a.m., and why it’s reasonable that at 7:53 p.m., my brain is screaming “FOR GOD’S SAKE, NO MORE, WOMAN!!!”

I suppose there’s only so much information one can retain in a day anyway. I’ve certainly put in 8-10 full hours of work today. Since I haven’t eaten dinner, and I have work tomorrow morning, it probably wouldn’t be so bad to stop for now.

The thing about me and prepping for the exam is that I get absolutely obsessed and I never feel like I’m doing enough. I tend to get really down on myself, and I don’t cut my body any slack. I accidentally undernourish myself by forgetting to eat and drink. I get crabby with myself when I have seizures, and heaven help me if I need to take a nap! That’s almost a personal failure. And when I am smart enough to put alarms on my phone (like to take my pills), I somehow manage to work through them without hearing the alarms go off. I’m like a woman possessed!

Like today, once again, I forgot to call Shared Solutions to find out if they’re willing to help with my copay for Copaxone this year. I’m down to 1 week’s worth of medicine, which is frightening.

Again, I forgot to call Dr. Giesser’s office to schedule an appointment. I’m rich with MRIs and have no appointment. It’s ridiculous.

I had a small breakfast at 9:30 am and then forgot to eat lunch til 4:30 – and I just realized that Adam put up a bowl of soup for me before he went to Writer’s Group nearly an hour ago… and I forgot it was in the microwave because I was too busy doing multiple choice questions.

ALRIGHT! Let’s turn this around and look at things in a better light.

  • Obviously, I’m motivated! 🙂
  • I’m feeling better, or I wouldn’t be able to do this. (Triple hip hooray for that!)
  • Taking 3mg of Melatonin at night seems to be helping IMMENSELY in the restful sleep department too, without adding any kind of unknown pharmaceutical to the mix. Big thumbs up there.
  • Adam is awesome, and he made me easily reheatable soup, which is still/already in the microwave. Easy fix. Easy dinner. Almost already ready already. 🙂
  • At least I’m upset with myself over the right things this time – like not taking care of my body from the get go, as opposed to berating myself for not knowing everything perfectly yet! I’m actually glad I fucked up so much on my MBEs today. Bad days on multiple choice now mean good grades later! That’s what studying is for!

As for health, today’s been great. I’ve only had 1 *real* seizure and a few brain farts. Haven’t been this good in I don’t know how long.

I’m sure part of it is due to working out on the Wii Fit. 🙂 I’m so glad I have something where I can work out for 2-5 minutes at a time, and fall back on the couch if I need to. I’d gift one of these to everyone with MS if I could. The balance games and yoga help me so much! Heck, even just the one where you do deep breathing and have to stay balanced while you breathe is helpful, believe it or not. Yeah, you read that right. The Wii Fit is helping me learn how to stand and breathe better.

Yes, there is a “better.” And I’m getting there. And not just because I sometimes need to be reminded to breathe… 🙂 Sometimes I also have to be reminded to eat and take my nighttime medicine, but not right now. Right now, I can do it all by myself. 😉

I Can’t Remember…. Is Topamax Working For Me?

Today, I had an appointment with my seizure specialist, Dr. S.

With the number of seizures that I had throughout the day, I have to wonder what the Topamax is doing. Then again, I’m fairly certain I’m still fighting off some kind of infection, which can cause seizures all on its own, the same way it can cause MS pseudoexacerbations. I’d say that it’s like it’s adding insult to injury – but it’s like adding injury to injury. Feh.

At any rate, the doc made a good point when he said he didn’t see that Topamax was helping me out a whole lot more than Lamictal was, you know, other than NOT causing me to have horrible mood swings and suicidal compulsion. In my mind, that makes Topamax better than Lamictal. He said at no meds, I was at 228 seizures a day – and I’m self-reporting at around 20-28 a day now.

The thing is, my seizure disorder acts just like an MS symptom. It flares when it wants to. If I’m too hot, if I’m too stressed, if my body just happens to feel like it…who the hell knows… it’s freakin Multiple Sclerosis…

So, anyway, we’re strongly considering switching me to a new medication (again!), but, again, we will be waiting until after I’ve taken the exam. (This is all too familiar…) It takes 2 months to swap over seizure medications….

I have so much more to say about this, but I am way too tired tonight. I just know it’s been some time since I last updated. I’m a little overwhelmed with seizures, getting over this cold, starting the Swank diet, organizing my studies for the bar exam, and, well, life in general.

I promise a better entry tomorrow.

Little losses sometimes feel the biggest.

Tonight, I yelled at my mother because she asked, once again, for me to put her on my bank account.

She wanted this because she was, once again, going to be giving me money. This time, the gift money to pay for the Wii, and I was yelling at her because all I could think was that I am an adult and I don’t want my mommy watching how I spend my money or having any legal rights over it, when I’m putting my paychecks in… I was yelling because I didn’t want to give up the belief that I could manage my accounts self-sufficiently.

My mom is a wonderful woman who is incredibly caring and is doing everything she can to support me and care for me while I have to deal with this condition. She raised me well, and is honestly one of the most moral, honest, and trustworthy people I’ve ever met. She feels guilty when she doesn’t pay meters on Sunday, and she absolutely freaks out when anyone in the family admits to pirating anything. (This is particularly funny to me, since I studied entertainment and copyright law in depth in law school and know the likelihood of being prosecuted in federal court for downloading one or two songs is about as likely as winning the CA state lottery on your first ticket.) So it’s not that I don’t trust her. There’s no one I trust more.

It’s just that, it’s one thing to deal with the fact that there are times that I have to cave to MS, and it’s another to realize that someone else might need to take care of my accounts and business for me… and that, being 29 and not married, that job falls to my parents, or to an appointed agent. I could, alternatively, hire an accountant. You know, with all that extra scratch I’ve got lying around… that I’m getting from my big money job, and from Mom and Dad, if they could get it in my account. *lol*

Something about having to rely on my parents at this age feels like a failure to me, but I know that it’s not. It’s just how it is. My ex-husband fucked me over. I started fresh, and then got MS while I was good and broke in law school – and then got a seizure disorder. I’m lucky to have them to fall back on. Adding them to my account is the responsible thing to do, and when you have a disease that can cause you to end up in the hospital at a moment’s notice, being irresponsible to assuage your pride is not an option.

Of course, projecting your anger at your disease and loss of privacy onto your mother really isn’t a good one either. So, I’m going to stop blogging now, get on the phone, and apologize, like a good daughter should. Because I love my mom, and she deserves so much better than to be treated the way she was.

It’s just things like this that no one thinks about when they talk about becoming disabled. They talk about your body. They talk about movement. But they never talk about the hits you take to your pride as an adult. They never talk about your independence as a person, just your independence with mobility. Sometimes, I think MS is trying to crush my spirit. Bur really, it can fuck right off, because I love my momma, and I know she trusts me to make good decisions and won’t judge my spending habits.

I just wish I could have come to that conclusion a little faster than I could run off my mouth.